Saturday, April 28, 2012

Heck of an ending to the week

The week was decently slow.  We had all the typical school stuff and all of that.  There were field trips and class assignments and spelling tests and reading homework, and all of those fun things.  We stayed busy.
Bob and I stayed busy as well.  We are now at 77.2 logged miles in 33 days!  I also started running some this week.  I'm still at small runs rotating with walking but I'm doing it!  I'm so excited about working towards my running goals.

The week ended with a BANG though.  Friday afternoon we had storms rolling in.  Jace was upset because he wasn't able to go outside and played.  So he laid belly down on the entry floor between the front door and the stairs.  I took the huge laundry hamper upstairs to hang clothes.  It caught a picture hanging on the wall at the top of the stairs, knocking the metal picture frame down.  It hit Jace in the back of the head at the bottom of the stairs.  It scratched his head and we were able to easily get the bleeding to stop.  He was doing well, eyes equal and reactive.  He stood up and next thing we knew he passed out hitting his head on the entry table, and had a seizure on the ground.  His eyes were full dilated and he was completely unresponsive and choking.  We of course called 911 and within minutes we had police, fire, and EMS.  Jace was transported by ambulance to the downtown Children's hospital.  He was very dizzy and very nauseous.  He was given meds to help with the throwing up, and he had a CT as well.  There was no bleeding in the brain.  He was sent home with a severe concussion.  He slept 13 hrs last night.  This morning he was still pretty out of it, but as the day has gone on he's done better.  He definitely gave us quite the scare.  All of the pictures have now been removed from the wall over the stairs, and we will never do that again.  I never imagined something like that could happen.

Eli has done decent this week.  He's had some struggles with body temp and has had to be watched fairly closely and kept inside alot.  He's now signing 21 signs and has even put 2 signs together!  We are so proud of how much he's accomplishing!

The kids have 15 school days left!  I can't believe another year is wrapping up!  Next year will be the only year ever that our oldest 4 will all be at the same school!  We'll have a kindergartner, a 2nd grader, a 4th grader, and a 6th grader!  WOW.

More updates soon.

Saturday, April 21, 2012

Busy Week

It was a busy week like always.

Emily did end up going back to school and she did well with no problems.  She left this past Wednesday for camp.  Her whole 5th grade class went.  They were gone until Friday afternoon and she had a blast!  She's pretty tired now and glad it's the weekend to get caught back up on sleep.

Jace has had a pretty quiet week.  Not much has gone on for him outside of normal school activities.  Today he meets with his new ADHD doc and we are excited to hear what she has to say.

Benjamin had a field trip this week with his class and really enjoyed it.  He also went on a field trip to the firestation with his respite worker.  He got to get on the trucks, sound the horns, put on a big fireman's coat and even got to use a fire hose!  He had alot of fun!  He also meets with his new doc today!

Ariana has also had a pretty quiet week.  She had school as always.  She's made alot of friends in the neighborhood and spends alot of time outside playing with all of her new friends and working on riding her bike!

Eli has been a busy little boy.  He is working harder on harder on using his walker.  He can get around the main level decently.  He is also working hard on his signing and is now able to sign 19 words on his own without prompting!  We are so proud of him!  He can now climb up on the couch and he can apparently climb out of his crib.  We will now begin the process to get him a sleep safe bed approved thru insurance.  He also had his EEG last week.  We got the results back late last night.  The neurologist on call actually called me and explained all of the results.  He did not have any seizures or fragments which is a good thing. That means that atleast during the EEG the meds were doing what they are supposed to.  He did however have flowing, which is when the electrical activity in the brain doesn't flow as quickly as it should.  This is something that we had seen on the last EEG so wasn't a big surprise.  Eli also went in yesterday for another KUB (stomach xray).  He is completely cleaned out finally so we are going to end up needing to back down on his miralax dose some as he's still shedding alot of his intestinal lining.

Bob and I are busy as always.  We have been working out and/or walking every day.  We are at 26 days and 62.7 miles!  We have also gone to the pool multiple times!  Today is my birthday so we are headed out for a special birthday date night!  I'm super excited to get to eat at my favorite restaurant!

More updates and pictures soon!

Thursday, April 12, 2012

Thursday updates

Elis EEG was this morning. He did really pretty well considering he was only able to sleep for 4 hrs. He cried a lot during hook up but fell asleep quickly. unfortunately we wont get results until next week.

Emily's appt was this afternoon. The doc did a whole neuro work up and said she is able to go back to school tomorrow but not to PE or recess yet. We will see how she does.

Today bob and I got in a 3 mile walk so I was so thankful for that.
More updates soon.

Wednesday, April 11, 2012

Quick updates

Emily is resting mostly. She has been complaining of being bored and not wanting to stay in a dark room so there has been some fighting there. She says that her head is still hurting, but her finger and leg are feeling better. She meets with her doctor tomorrow to see how she is doing and to check in.

Tomorrow is Eli's next EEG. He has to stay up until midnight tonight and then be up at 4am. We check into cmh at 7:30am. Then on Friday we meet with the audiologist and we will redo his hearing aids to give them another try.

Bob and I are doing well. We are on day 16 of working out every single day. We have logged 45.2 miles and are enjoying seeing our speeds increase.

More updates in the next few days as we get test results and such back in.

Tuesday, April 10, 2012

Bike Crash

Yesterday early evening Emily and Jace were riding their bikes while we cooked dinner.  Jace burst thru the garage door yelling that he needed help and that there was a problem.  Apparently they had been riding in the huge drainage ditch with no helmets.  Emily hit a rock and crashed, landing on her head and her left hip/leg.  Jace said she passed out.  He tried to get her up and she passed out again hitting her head. The third time he got her up and drug her up to the top by the street and then rode his bike home fast for help.  Bob flew down there and I brought the van.  She couldn't walk and didn't remember anything.  She had also busted open the finger nail and top of one finger.  Her and I headed straight to CMH ER.  No broken bones but a badly bruised tailbone, hip and femur.  She still can't walk or lay on her back or left side.  She has a bad concussion though.  She isn't allowed to be in light, do any physical activity, watch TV, play videos games, read books, or do ANYTHING that activates her brain to work much.  She has to do this until the headaches are completely gone for a full 2 days.  The doctor said to expect a week plus for recovery.  She is situated sideways in the recliner sleeping and Bob has checked on her often.  The doctors have her on tylenol which isn't working as well, but they don't want her taking ibuprofen because of the brain injury.
I'm so proud of Jace for how strong he was and how level headed he was during all of this.  He remained really calm and did exactly what he should have!
We will be having LONG talks about helmets and where it is and isn't safe to ride bikes.
I will update more when I can!

Sunday, April 8, 2012

Easter 2012

I don't have time at the moment for a big post BUT I wanted to get the promised pics up!  :)
Last night we went out for my birthday dinner to Cheesecake Factory.  There were all 10 of us and everyone did really well!
This morning we all went to church for service and the easter egg hunt.  Here are some pics of the kids and the family!

Tuesday, April 3, 2012

April Already

Wow.  Like always time is flying.  We've been so darned busy there has been hardly any time to get on the computer.  I've been very behind with blogging, Facebook, and pinterest....and honestly I'm as happy as could be.

Emily ~ She's doing pretty good.  Her grades are great, again making principals honor roll with all A's.  She's staying busy with choir and violin and still really enjoying both.  She's been working hard on making some friends and has enjoyed playing outside and riding her bike lately, or walking Tebow.  She's been reading alot as well and seems to be rekindling her love of books.  We are hoping that she continues this much better mood and finishes out the year strong.

Jace ~ He's ok.  His meds had an issue on refill and we definitely saw a huge shift in his behavior and moods.  Hoping it all levels quickly.  He's doing decent with school.  He's working hard on his handwriting and slowing down a bit on his work so it's readable and correct.  He is finishing up all of his state assessment as well.  this was his first year to do them out loud with his speech therapist and it really seems to have helped.  We are looking forward to getting the results.  He got a brand new trickster stunt bike and has spent every waking moment outside with the neighborhood kids riding his bike.  He loves it!  He's already getting his dark tan and stronger freckles that will last all summer.

Benjamin ~ Ben is really changing lately.  He's had alot of changes at school and they seem to be helping.  They are having him do alot of sensory activities, including heavy work.  He's sitting on a special cushion, pushes the teacher around in her chair, walks thru the hallway, carries a heavy tote full of books, does jumping jacks, wraps up in a pillow, and they are looking into him using a weighted vest or a lap pad.  His teacher said they really seem to help and she's even been able to use some as a reward if he gets his work done.  At home he's done really well with Brian, his respite worker.  They get homework done and then head outdoors.  Ben is loving riding his bike and enjoys going all over the neighborhood.  They also explore the "secret" walking paths and the creek that runs thru our neighborhood.  Ben also had 2 separate play dates this past weekend with 2 friends from his class.  Academically he is still doing really well.

Ariana ~ She's doing well academically and socially.  Still alot of speech concerns and OT issues that we are working with the school to address.  She will get these services thru the school and potentially some extras from CMH, our local children's hospital.  Like always she loves school and has been making lots of friends.  She can now write her entire name as well as sign it without any prompting!  She got her first big girl bike a few weeks ago and is loving riding up and down our street.  She's hasn't tried her first walk yet, but she's not far.  She spends alot of time in the backyard playing with Tebow.  Her meds seem to be working well, and that really helps as she isn't having to run to the bathroom 20 times a day any more.  She meets back with her kidney doctor next month.

Elias ~ He's my little man.  He was doing really well.  After he was diagnosed with a severe adrenal insufficiency and started on all of his new meds it seemed like things had leveled well.  Next thing we knew though his sugars were dumping again and we were back to doing rescue boluses.  Then he became horribly constipated (2 movements in 2 1/2 wks).  He went into his new GI and they did xrays.  He was completely backed up.  The GI is concerned that between his gastric motility and the Mito that this is something we really need to get a handle on.  He has cancelled all surgeries and procedures until this is better under control.  He did a 3 day clean out, which of course resulted in some dehydration and sugar issues.  Now we are on 1/2 doses of miralax 2 times a day, plus dulcolax suppositories every 2 days if no movement.  He also spoke with Eli's geneticist and they discussed their concerns with Eli's sugars.  Apparently with the Mito and adrenal issues Eli's sugars will forever be on this roller coaster.  The geneticist says ultimately there is nothing we can do, but try and support him as best as we can.  Everyone is in agreement that there is no fixing it and our only goal is to try and stay in the stable point and keep Eli safe.  Like always not what we want to hear.  Eli ended up getting an eye infection, followed by his body's lovely response of a rash all over his arms and shoulders.  Now 3 days later he has bruises popping up all over his extremities.  His doctor and I have spent alot of time emailing and sending pics and orders back and forth.  We are hoping soon to get back to a stable point as we LOVE the Eli we get during those times.  He is becoming so animated and lively and we cherish those times.  He is working harder and harder to master his walker and can get around pretty well with it.  He's signing 15 words now, and can understand even more.  He's finally starting to do a crude pincher grasp and is so proud of himself when he plays peek-a-boo on his own!  He's learned how to go out the doggy door and loves "sneaking out" and playing on the back deck.  He can crawl up the stairs all by himself and is working hard on getting back down them.  So many advancements during our stable times!

The kids are at the end of the school year.  Ariana has kindergarten rounded later this week, and all of the kids are going to open house at their new school next year.  Next year will be our only year to have all 4 of our kids in the same school, as it's Emily's last year (6th grade) at the elementary school.  We will miss their school this year as it's in our neighborhood, only 2 blocks from our house.  Luckily their new school isn't far, but not walking distance anymore.  Our kids are a bit sad, but glad that their classmates are all going with them, as well as most of the teachers.  The schools have had alot of joint activities for the kids to all get to know each other, and a few more are coming up as well before the big merger.  We are curious to see who ends up buying the school here that is closing.  Our guess is a church.

Bob and I are doing well.  We've been busy as could be with the kids, and the house.  I've been working on some pinterest projects, I've read some books, gotten thru multiple knitting and sewing projects, gone to a fundraiser, been out with friends, been on numerous dates nights just the 2 of us, and a double date with some friends of ours, walks once maybe twice a day, some workouts, and even a 6 day vacation to Wichita over spring break.  We also headed to the zoo, a movie (The Lorax), and the Money Museum at the KC Federal Reserve.  We have been enjoying this mild weather outdoors where we can spend time as a family, all 7 of us!  In my free time I've also maintained all of Eli's medical files, organized all the kids papers from this school year, organized all of our household info and papers, done Ben's newest paperwork for his MR/DD waiver, met Eli's new case manager for the TA waiver, hired a 2nd nursing agency, interviewed for/hired/trained a new nurse, interviewed/hired/trained Ben's respite worker, been to 2 IEP meetings, 3 parent/teacher conferences, and who knows how many other things.  It's been busy but good and satisfying.

This coming weekend my parents are coming up for spring break and we will celebrate my birthday (April 21st) early with them.  We are going to go out as a family for dinner on Saturday evening, although I haven't picked where yet.  The kids are excited for church Sunday and the big Easter egg hunt between services with all of their friends.  We have officially decided to join our church (Unitarian Universalist Church) that we've been visiting for the last few months, and the kids are super excited about that as they love it there!

Other than that it's just same old same old.  I promise to try to get on more often and update.  My goal is to get back to 3 times a week.  No matter if I have time or not to get on here know that I'm always open to emails, texts, calls, or skype!  My goal this weekend is to get some good pics of the kiddos so I will get those posted by Monday!